a post-op check-in....

I have been "checking out" a bit since Thursday's surgery, mostly resting and sleeping and resting and sleeping.  Even during the movies that my family rented over the weekend, and during the endless boardgames we played, it seemed that I took advantage of every moment when I could close my eyes, and found myself in a strange, drowsy twilight most of the time.

Today was my first day alone since the surgery, and I've found it necessary to surrender to this need for stillness and sleep, and I'm finding that I can no longer blame it on the pain medicine, as I chose to skip it this morning. It's a strange feeling to not get anything done. To just lay around and watch movies (or rather, sleep through movies) all day long.

Last week's surgery went the best it possibly could. It turns out the person scheduled before me cancelled their surgery, so when I arrived at the hospital, I was immediately caught up in preparations and paperwork, leaving me no time at all to be nervous. At one point, there were nine people scurrying around my little tiny pre-op room, all doing their thing...  taking my blood pressure, putting leg compressing stockings on me, asking about my current meds. It was a whirlwind....  and similarly, what is usually a two hour procedure wound up being 45 minutes long--  laporscopic, as I had hoped. My gall bladder was not infected, but it was enlarged and inflamed, so it's a good thing that it came out when it did. I listened to a guided meditation and music the entire time, and I had my handy dandy wonder woman talisman with me as well-  not that I remember!  I was a very lucky woman, with a super sweet medical team on my side. The next thing I remember after they wheeled me into the operating room was waking up to a very kind nurse in the recovery area, asking me if I'd like some gingerale.

The best part about it all was having a four day weekend with my honey. The worst part was getting rid of the gas trapped in my belly and my shoulders. My friend Whitney came and did her acupuncture magic on me, and that helped tremendously. And now, after several days of relying on others to help me do the most basic of things, I am able to get myself up and down from sitting, I am able to go to the bathroom on my own, and this morning, I even accomplished putting socks on all by myself. Yes, this was huge. Still can't tie my shoes, but that will come in time....  :)  And I have to retrain myself to take deep breaths, as it's much less painful to breathe shallow, and then when I startle or laugh or sneeze, something pinches in there, but other than that, the pain is much better.

Originally, I had thought about taking this week off of lyme-related meds to give myself a breather, after cancelling everything else I had planned....  and I didn't jump back in where I had left off, but my doctor did encourage me to take just two antibiotics to keep my body "in the game" so to speak. They are easy peasy to take, and don't affect me at all....  so I'm happy to oblige, especially knowing that next week, we'll be able to pick up right where we left off, with one more round of the lyme/babesia phase part B to go before we head into the heavier stuff toward the end of October-beginning of November.

So I'm now gallbladder-less.  And it's given me a much broader perspective, as I consider where I am health-wise....  and for that, I am grateful. My dad will soon be having a knee replacement, a facebook friend of mind just underwent brain surgery, another friend is facing a startling increase in her MS symptoms, and next week, I will be back on some more intense meds, leading me to who knows where....  and we all just keep chuggin' along, hoping for the best, knowing that somehow we're being taken care of.

Forgive me for being brief, but I'm a bit uncomfortable sitting here at my computer, so I'm headed back to my cozy spot on the couch for more rest. If any of you locals want to stop by for a visit, give me a call....  I would LOVE that, as I'm here the rest of this week, resting!  Thanks to my dear friend and neighbor, Tracy, I have been relieved of pick-up duty all week long....  which is good, because I am just not ready to drive just yet. But I can tell right away that it's going to get old, real fast, this surrendering to rest. So come see me!

quick lil' update...

I don't want to spend any good amount of time posting about this...  frankly, it makes me feel discombulated in ways that make me seriously want to play Wordbrain and do crossword puzzles all day long, so that I don't have to use the emotional part of my brain! But I wanted to share, for those who are interested. 

I will be having my gall bladder taken out next Thursday, the 24th. The goal is to do a laparoscopy, and if all goes well, I should be able to go home the same day and recovery won’t be so bad. The surgeon did warn me, however, that because I put this off for so long (she referred to the gall bladder attacks I had back in college), and my gall bladder is SO full of stones, I may fit into the 5% who need a bigger incision (ugh!), and that would require a couple of days in the hospital and a much longer and more painful recovery. Sigh. 

I’m trying not to freak out, but I’m not gonna lie… it’s all sinking in, and I’m a bit stirred up.  I've only had one major surgery (a c-section), and that was a whole different thing...  I would up with a baby at the end of it. I imagine that as things sink in further, it will be necessary to ask for help with the kids and with food...  but I'm just not ready to go there right now.  

That being said, I also have to remind myself that I am not the "average American" as far as health and diet goes...  and that hopefully, it will be a quick and easy surgery because I've taken pretty good care of myself for a several years now...  and because, dammit, I am wonder woman, right?? RIGHT?? 

She also said I should be able to pick up my lyme treatment as soon as I’m able to quit taking pain medicines… so hopefully, if the laparoscopy is successful, I’ll be able to resume treatment within a week or two...  Keep your fingers crossed!!!! EEEEK!

monkeys and gall bladders

The trip to the zoo was lovely and challenging all at once...

As we started off on Saturday, we all had a sense of adventure planted deeply in our hearts...  we left good and early, planning to arrive as the zoo was opening at 10am.

Well, just about forty-five minutes or so down the road, we were stopped on the interstate...  turns out that during some blasting they were doing that morning, they had had a bit of a rockslide that closed both lanes. They suggested going back to Asheville, and then getting to Knoxville using a very roundabout way....  another guy told us about a back way we could go that might be quicker.  After some squabbling that nearly led us back home again, we chose the latter.

What was supposed to be a two hour drive wound up being just over four hours, through curvy mountain roads riddled with kudzu and confederate flags. We asked for an adventure, and adventure sure was what we got!

The zoo brought up all of the paradoxical emotions that it usually does...  the joy of being so close to wild animals, and yet, the fact that they are there in the first place broke my heart yet again. The elephants were particularly sad this trip...  they were separated for some reason, and they all seemed bored and restless, swaying back and forth as if trying to comfort themselves.

Eventually, we made our way to the primates, which as far as I'm concerned, is pretty much the only reason to visit a zoo. Most of the gorillas were inside hiding away, as it was quite chilly outside, but both new babies and their mamas were in smaller nurseries where we were able to watch them for a bit. They were adorable....  but the real connection came with the chimpanzees, especially the one pictured above.

When I got there, he was sitting near the window, examining his hands, and what looked like a little scrape on one of them. I sat down next to him, and we proceeded to show one another our hands for fifteen minutes or so, before I swear he made some sort of sign, and then rolled over onto his back. We hung out together for a while just like that, and then, just as the kids were getting impatient with me, he got up and walked away.

On top of the usual mixed zoo feelings, there was also the fact that I wore out a lot easier than I had during past visits....  still, I feel like I held up pretty good, and when we left, we headed into downtown Knoxville for lunch at Tomato Head, which was a slightly insane move seeing as how there was a BIG football game getting ready to happen, and we felt extremely out of place not wearing orange as we navigated our way through lots of traffic.  But it was a good healthy meal... afterwhich my body declared it was DONE.

So we headed to our hotel and relaxed. Luckily, the rockslide was cleaned up by the time we needed to go home the next morning.

I wasn't prepared for Monday morning though. A short weekend away after over a week off of meds felt like a vacation, and it's hard to get back into the swing of things...  not to mention that Monday also means it's time to make some important decisions.

I had my ultrasound this morning, and as I pretty much expected, the woman said it was filled with stones...  she said it was so full of stones that she couldn't see the inside of my gall bladder, but that the wall did not appear inflamed. Now I wait to get the official report through my general doctor's perspective, and we'll go from there.

The thing is, I've been here twice before, once back in college, and once about 4 years ago, when gallstones brought me to my nutritionist in another attempt at avoiding surgery. I've done gall bladder cleanses and I've changed my diet completely, and this time, there's not really that much more I can take out of my diet without feeling like I will be in prison for the rest of my life. Soooo...  I'm doing some hard thinking, and decided not to go back on my meds quite yet.

My friend, Whitney, who is also an acupuncturist, says that in Chinese medicine, the gall bladder is the "decision maker."  How ironic, eh? I can feel my gut leaning in the direction of taking it out (both physically and intuitively!)...  not that I want to, but there's something telling me it's time. I've already been emailing with my lyme doc, and she said while stones alone are not usually enough of an indication to remove it, my history with pain might indeed be, and that she'd rather it be an elective versus an emergency surgery.

If ever there was a time that I wish that all of my doctors and I could sit down and have a powwow, this would be it.

So now, I'm in wait and see mode. I'm in deep breathing mode. I'm in learning to trust my gut mode.  I'm in trying-like-hell-to-be-patient mode.  :)

choices, choices...

I've been putting off an update, because honestly, I haven't known where this week was going to take me, after having some assumed-to-be gall bladder troubles toward the end of last week. Thankfully, I haven't had any major issues since, but it does mean I'll have some interesting decisions to make in the next few days.

I saw my family doctor yesterday who ordered up an abdominal ultrasound. There's the possiblity of a HIDA scan as well, but my two doctors seem to be in disagreement about how important that would be at this point...  which of course is always a good reminder that everyone is going to have their opinion, but I'm truly the boss here, and am capable of listening to my body. While I have moments of feeling rather overwhelmed at the choices to make-- HIDA scan or not, start meds again on Monday or not, and quite possibly surgery or not-- I'm trying my damndest to go with the flow of how I'm feeling right now, which relatively speaking, is pretty darn good. These last few days,  I've had more energy than I've had in a good long while, and my muscle cramping and achiness has dwindled quite a bit! 

The week really took a turn on Tuesday, when the mailman came and brought me the care-package pictured above. This wasn't from anyone I know very well, mind you...  this was from the AMAZING Rebecca Galavan, a fairly new facebook friend who recently launched a project called Smile Boxes for Lyme (http://www.gofundme.com/smileboxforlyme). PLEASE check it out! This is not your average fund raiser...  Rebecca has lyme herself, and has had many challenges....  but she wanted to turn a sour circumstance into something that is a gift to many. What a gigantic heart she has, as she is raising money to send care-packages such as mine to lyme patients all over the country, to ease them from a little bit of their suffering.  This is not something I was expecting at all, and it brought me to tears as I opened it and saw all of the goodies inside...  pajamas, art supplies, probiotics (to a fellow lymie, these are priceless!), bath stuff, yummies. Let me tell you, to have someone acknowledge you in this way...  I see that you're struggling, and I hope this helps a little bit...  is simply magical. And inspiring. And moving beyond belief. And I intend to pay it forward in some way....  still stewing on what that may look like. 

One way is that my dear friend Terry and I have decided to throw together a Chronic Illness Support Circle!  We will be having our first gathering here in Black Mountain on Sunday, October 4th. If anyone reading this is (semi)local and wishes to join us, just holler at me and I'll send you the details...  and you are welcome to pass this on too, as it's open to anyone. It feels good to have put the plan in place for this...  and I'm excited to see what it will become!

On Wednesday, I went to my first official equine-assisted therapy appointment, and met the horses! I'm fairly certain that this is going to change my life in wonderful ways. I wrote a whole blogpost about it on my other blog (http://www.sacredcirclecreativelife.com/heartstream/choosing/) ...  check it out if you're interested. 

Speaking of which, I'm tossing around the idea of narrowing back down to one blog....  I've been torn about this for some time, worried that the folks who read that one aren't necessarily interested in reading this one, and vice versa, and worried that perhaps I'm sharing TOO much...  but as I slowly regain my inner moxie and turn back to some long-awaited writing projects I have been wanting to work on, I'm reminded that really it's all coming from the same place....  and that consolidating would likely conserve energy for diving deeper.  I'm still sitting with this, but I'm suspecting that another change will soon be upon us, and I will let you know if so. 

In the meantime, I refuse to make any decisions until after we venture off to the zoo tomorrow to visit with the gorillas!!!  Squeeeee!!!!!  

who were you?

I am continuing this process of shedding and releasing.... and thankfully, I now have a couple of easier weeks of treatment to keep me headed in that direction. The only thing I'm currently taking is Coartem, yet another anti-Malarial drug for targeting Babesia... I only have to take it for three days, and then I have a WHOLE ELEVEN DAYS off!  I've been having some somewhat debilitating pain in the form of muscle cramping and joint inflammation with this new med, but frankly it beats the last few weeks of nausea and intense lethargy. It's funny how perspective changes like that.  

With hopes that I'll be feeling pretty good during these upcoming eleven days off, we're planning on taking a weekend away in Knoxville to get our gorilla fix.  I have such mixed emotions about visitng and supporting zoos, but I do know that it's imperative for me to have opportunities to connect with creatures great and small--  it's one of those parts of me that has re-emerged in these last few weeks in BIG ways.  

Before the world told me who I should be, I wanted to be a zoologist. And I still have dreams about working with animals in some way. When I lived up in Boston during graduate school, I would spend hours at a time planted in front of the gorillas and chimpanzees at the Franklin Park Zoo. I would unpack my bag for them, and they would sit, their chins propped up on their elbows, eagerly watching whatever would emerge next...  a set of keys, a journal, a pencil, a hair-brush. By the time I left, there would always be a crowd of people watching, but I wasn't in it for fame...  I was in it purely for the pure, unassuming and mysterious connection with another living being. It made my heart happy, and simply smitten with the idea of inter-species communication. 

Ever since then, my visits to any zoo have resulted in similar connections, and have ended with my kids getting impatient and eventually having to tear me away from the gorillas against my will, when I would have been content to stay with them forever. I can't contribute these magical visits to being a gorilla whisperer or being gifted in animal communication...  I'm lucky if I can get my dog to sit!   I think what's it's truly about is being present...  deeply present...  both with these amazing creatures as well as myself. 

a visit to the Louisville Zoo in 2009

So needless to say, I'm ready to go and see what the gorillas at the Knoxville Zoo are up to.  Evidently, there two new babies, born just a couple of months ago... I'm hoping for some time to see them and perhaps have a little game of peekaboo. 

In the meantime, I'm settling for some more domesticated animal bliss....  Friday, I'm headed out to the boonies to visit with an Equine Assisted Therapist. I'm so very excited about this, as I can't imagine there's any better way to get my head back on straight!  It's also given me the opportunity to become comfortable again asking for help, as I'm not sure I'll always be able to drive myself out there. Thankfully, a couple of friends have stepped up and offered to take me when I'm not up to it. I am so very grateful. 

Speaking of asking for help, I've been really loving being on the other end of that equation this last week or so, and being able to put my energy into helping others rather than into my own stuff. In just a few minutes, I'll be headed up to my neighbor's house to give Tinkerbelle the cat some medicine after she gave us all quite a scare a few days ago with what is now presumed to be just a little ole bee sting. With my neighbor being out of town, we spent most of Sunday at the local emergency vet with Tink, and now, that kitty and I couldn't be any more inseparable! What a gift after finding the other neighbor's dog last week... and what a beautiful reminder that helping is actually a priviledge, not a burden. 

bear medicine and rebuilding foundations

Over the last week I've seen two bears...  and on recent trash days, it's been clear that they've been around much more than that, due to the messes they've been leaving around my neighborhood...

The animal medicine cards remind me that bear is all about introspection...  she's about seeking truth and inner knowing, intuituion and instinct. And in some ways, lately, now that the kids are both back in school, I feel as though I've been hibernating, hiding away deep down in the cave of my own longing...

Week 2 of the 3rd round of the 2nd phase has been a little easier than last week... thankfully, I'm not taking quite as much stuff. I am experiencing some loss in appetite, some belly aches, some mild headaches, nausea, and fatigue....  but I'd say that even more than these few physical symptoms, I'm mostly feeling it emotionally this week. Interestingly, I've noticed that my heart feels more open, like a window letting in the breeze and warmth of the sunshine.  I seem to feel love and compassion a whole lot stronger, which feels really good....  but I also feel everything else a lot stronger as well....  and some of those things aren't nearly as pleasant.

It doesn't help that I've a had a couple of blows this week, including going over to my neighbor's house to let her dog in, and finding that her beautiful black lab, Maggie, had passed away.  So, so sad....

I also have to admit, I haven't been able to completely let go of what happened last week with the carpool situation. I still hurt from all that, not so much from the woman who called that day, but from there seeming to be no carpool at all at this point, as it seems that I've been dropped by all of them now.  And so I've been picking up both kiddos every day since school began... which even though has had me feeling a bit nerdish and left out, has ultimately been fine, and dare I say, even welcome... for now. I'm just not sure how long I'll be able to keep it up, and I struggle within myself as I try to decipher if things are truly okay, or if they just have to be okay, because that's the only option there is.

I suppose I'm feeling extra sensitive to what feels like the loss of friendship and tribe, as I find myself questioning and trying to understand the motives and intentions of those around me, and moving in and out of a screw-the-world kind of place, not wanting to trust anyone. I'm tired of bullshit and pretense and dancing around my illness so as not to make others feel uncomfortable. It's exhausting. And while I have such a rich online community that seems to really care, I'm tired of wondering why so few of my local friends call me up and ask how I am. Is it just that Lyme disease is so very misunderstood? Do people not realize how very hard and lonely this journey can be? Or is it just me, clinging to the struggle?

And so I come stumbling back to the red thread again, and remember that all I need to be responsible for is me, this spot right here, and that their story is their story, not mine. And it comes down to owning my own life, trusting my own inner mama-bear knowing, and choosing in this very moment what I wish to surround myself with....  and that is truth, deep caring, shared vulnerability, getting down to the bare naked nitty gritty of what's real and meaningful, loving and sustainable.

And so I'm doing some letting go and deconstructing of some of the illusions that I've built up around myself. I'm emptying myself of extraneous stuff. I'm paring down my address book, and letting go of people who don't seem to give a flying fig about what's going on with me. I'm cleaning out the cabinets and getting rid of the food that no longer nourishes me. I'm releasing more pieces of my business, sending out my last newsletter for the time being, simplifying my website and blog.

I don't like how "final" it all feels...  but I know underneath my fear that it's only as final as I want it to be. And I also know, without a smidgeon of doubt, that it's a necessary step in my healing, even though I seem to always be surprising myself with what I'm actually ready to release. It's as though I'm knocking down an old, torn up house in order to build a new one... going through the rubble and determining what boards and nails may be salvagable, and questioning if it's worth the risk to use them again...  tearing down every last piece of what I've always seen as my foundation, in order to create a new one that is strong enough to hold me and all that I've ever dreamed of.

This week:
Monday, Wednesday, & Friday--  Ceftin, Minocin, Malarone, Artemisinin, and Enula

counting the blessings

It's been a rough week. Just when you think you've maxed out on the yuck, there it is... more yuck. Emotions turn into headaches and nausea and achey muscles so easily. And yet holding in my emotions right now is simply not an option as the meds attack the boogers in my brain and leave me wearing every little piece of my heart out on my sleeve. And the taste of all of the meds that I can't shake from my tongue continuously irks me and stresses me out, leading to more emotions, leading to more headaches and nausea and achey muscles. It's a vicious cycle. And so now that the kiddos are both back in school again, I going to try to get back into meditating...  be vigilant about avoiding stress...  be very choosey about how I spend my time... and am hoping to go for some equine-assisted therapy, after Deena drove me to a neighboring farm last night to visit with the horses after I lost it a bit when Noah jokingly locked me out of the house. Their presence was so very soothing for me, and this calls to me.

And once again, I find myself revisiting the intense discomfort around asking for help. It's so very difficult to not feel like I'm asking too much, or like I'm taking advantage of people. It takes everything in me to trust that there is no scorecard, to shed the guilt of not being able to reciprocate right now and be grateful, and yet, I find myself baking cookies when I can barely stand long enough in the kitchen to do so, gifting chocolate, writing thank you notes, giving away my art, and doing whatever else I can to somehow make up for just a fraction of the help I receive.

A couple of days ago, I received a phone call from one of the kind people who was helping me get Zoe home during her first year of high school. It wasn't an ideal situation...  I still had to drive the twenty minutes or so to meet them on the outskirts of town, but for the most part, I was able to avoid the chaos of downtown traffic, and for them, it was on their way home. Unfortunately, when I had to venture in and pick up Zoe all the way in town, I wasn't able to give rides home to all of the other girls because there was less room in my car due to my having Noah with me as well...  and so I helped out as much as I could... got out of my car to thank them each time they dropped off Zoe except for those days when my body wouldn't allow it... and baked cookies...  and bought chocolate... yadayadayada... but evidently, it wasn't enough.

It turns out that she and one of the other moms had been talking, and had come to the conclusion that it was no longer fair that I wasn't doing more of the driving. Mind you, as school was inching closer, I was already in a panic about driving the shorter twenty minute jaunt as my treatment gets harder, and now this. So this (brief, because I ended up basically hanging up on her) phone call seemed to throw me off of the edge of an emotional cliff. I found myself questioning every relationship, every favor, every intention. Weeping uncontrollably. Feeling like there was no one out there to lean on. Finding myself wanting to scream, "You wanna know what's not fair???  Fucking lyme disease is not fair!!! Losing my business and my income is not fair! Losing my ability to go for a hike or do a normal yoga pose or write without getting a headache is not fair!"

A good night's sleep and some amazing compassion and kindess from my facebook friends brought back some perspective...   thankfully out of loser-ness, and into gratitude again. The fact is, we never know what another person faces...  and it's not my job to presume what her story is.  I used to find so much pleasure in people-watching and creating sagas in my head about where folks were going, what they were doing, who they were underneath the surface of their bodies. But those were my stories, not theirs. And so while I'm not completely void of the hurt I felt after the phone call, I can atleast remind myself that she has her own stuff going on, and that her words were really not about me.

But truth is, I'm terrified. Today is Zoe's first day of school, and I will be going all the way into town to pick her up later. I'm not sure how I'll be feeling. The addition of xylitol and lactoferrin this week has really intensified things, as they are biofilm busters, and evidently, I've got some biofilms goin' on! Yesterday, I had a mild fever and a dull headache that just wouldn't go away. Last night I had a dream that someone shot me in the head, and I woke up this morning with the same doggone headache. I've been chugging so much water that I have to pee every five minutes and it's better now, and I am hoping that the upswing will continue. Deena assures me that if come this afternoon I am feeling really bad, she will either pick up Zoe herself, or find someone who will....  and I trust that all will be well. But I'm still a bit shaken, wondering how we're going to cope as we head into the most intense treatment phase of all, not sure if I'll be able drive at all.

But despite all that, there is much to be grateful for... and what I'm really here to do today is to count my blessings.

There is my friend, Carol, who I've known since our daughters were still growing inside our bellies, who is willing to help in whatever way she can, and who is like family to me.

There is our neighbor, Tracy, who has the biggest heart I've ever seen, and is willing to drop everything and pick up the kids if she's not already busy, and always comes out for a catchin' up if she's home when I'm out walking the dog.

There is Marna, who emails me a sweet love note every single time I write something on this blog, and Carol, who almost always responds with supportive and compassionate comments.

There is Jaci, who spontaneously invites us to swim in her pool and offers up other healing things as well, and just makes me feel so loved even though I hardly ever get to see her.

There's Anne, my doc, who always answers my emails, and confirms that yes, this sucks, and yes, we are on the path to healing, and urges me to cry and get it out and reminds me of the spiritual journey I am on.

There's Terry and Paula, a couple of the wild women who continue to humble me by their love and deep friendship long after circle is over, and there are all of the other wild women who conintue to tug on the red thread from time to time, reminding me that we are still connected.

There is Whitney and Missy, who even with their own lives being topsy turvy, both pause to send me  texts letting me know they're thinking about me and reminding me of my own power.

There's Kyeli, who skypes with me every two weeks from across the country, and Brandie, who occasionally sends me a card in the mail, and countless, dear and precious people on Facebook who are always looking out for me, even though I will likely never meet many of them in person.

There are my parents and Deena's parents, who are constantly helping to fill in the enormous financial gaps with me not working and needing all this medical care. Although their profound support doesn't stop there...  I'm not sure how we ever got so lucky to be born into our families.

There is Zoe, who is always willing to overdose on games of Parcheesi with me just to distract me from my pain, and there is Noah, who makes me laugh with the quirky things that come out of his mouth, and inspires me with his own ferocious appetite for health in the form of a six-pack.

There's Deena, who loves me more than I ever imagined anyone loving me, and who is always there, no matter how crazy I get.

And there are so many more that my lyme-brain won't let me remember at the moment.

I am so gosh darn blessed.